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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts



TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned

Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
NORD Member Organization
See RareConnect TMAU

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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

Thursday, April 2, 2009

Research study regarding sharing genetic information

One of the unique things about this study is that a quarter of the data will come from individuals who belong to support groups and advocate communities like ours.note: the survey is not associated with this blog

You are invited to participate in a research study which requests information in relation to sharing genetic information, from genetically flawed communities. The request for participants was originally posted on the Body Odor Support and Yahoo TMAU forum:

The purpose of the study is to collect thoughts, opinions, and beliefs from patients about who has responsibility for sharing genetic risk information within families, and when it is morally acceptable not to share information. One of the unique things about this study is that a quarter of the data will come from individuals who belong to support groups and advocate communities like ours. The researchers believe that the opinions of people like us, who actually live with these situations, are key to their research.

The data will be collected through an IRB-approved mailed survey. The survey will present 12 short stories about different ways providers and patients might react to situations that might involve sharing genetic information with family members. Each brief story is followed by 2 questions. The entire survey takes about 15 minutes to complete.

If you would like to participate: As a first step, please go to an online survey to fill out your contact information. Once you have done this, the survey will be mailed to you at the address you provided in the online survey. It is important to note that the researchers will not have access to your email address—the website is set up so that email address are not "captured." All information will remain confidential and that names will not be connected to answers. The site will provide more information on privacy but I can assure you that we can feel confident about our privacy because the professionals involved are the same honorable people we've dealt with over the years who work for our

This is the link to the survey:

Thanks very much for your participation; we have to stand up and be counted every chance we get.


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